banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Forum Statistics
Forums30
Topics43,792
Posts518,795
Members13,838
Most Online1,568
Jun 29th, 2016
Newest Members
Dori, Mel_Sigman, wle2, Ur4n1cD34Th6488, Bega
13,838 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.

KickAS QR Code
Previous Thread
Next Thread
Print Thread
Page 1 of 3 1 2 3
#226016 04/16/06 02:16 PM
Joined: Jul 2002
Posts: 1,198
Steel_AS_Kicker
OP Offline
Steel_AS_Kicker
Joined: Jul 2002
Posts: 1,198
Apart from the occasional banter with Bilko, i find i am missing the level of discussion on causes and technicalities of the past with Gerard and Arjan and John and Bilko and others and JCW in his favored devil's advocate role.
So
I would like opinion on what happens at the time when medicos say (or used to) that AS "burns itself out".
Yes, it may be another furphie like AS only affects males in their early twenties, but the truth is that it has a history in many people of running a course and then lessening and leaving them.
If true, does this mean their gut is healed?
Does it mean they have no internal "colonies" of Kp.

I am eating rice twice daily (more with rice cake snacks) with no ill-effects, take no supplements of note, just broad mineral sources and greens. I can get iritis if i eat wheat, but get no symptoms otherwise - my neck stiffness is vestigial and will always be stiff.
Only lower back pain i've had for ages is bi-lateral and from too much strong coffee - kidney pain.


Ted


One cannot believe all one reads on the Internet...
Abraham Lincoln
la_monty #226017 04/16/06 10:53 PM
Joined: Jan 2002
Posts: 90
A
Apprentice_AS_Kicker
Offline
Apprentice_AS_Kicker
A
Joined: Jan 2002
Posts: 90
Yes, I think things are much more complicated. If it were only Kp it would be so simple to fight it. Therefore, it's not only starch.

Example: you can eat rice wich is full of it other will flare just of the sight of it.

As I'm slowly realizing the main reason for my case is not starch, but stress, fatique and toxins. When I have a lot of latter even strict NSD and apple fast can't help. Otherwise, I can tolerate reasonable amounts of starch pretty well (LSD, Ebringer).

The disease activity is affected by individual's factors as well as environmental factors like climate, weather, radiation, pollution, etc.

la_monty #226018 04/17/06 12:19 AM
Joined: Feb 2006
Posts: 181
First_Degree_AS_Kicker
Offline
First_Degree_AS_Kicker
Joined: Feb 2006
Posts: 181
Well, I don't know much but some thoughts do occur to me. I've had A.S. since I was 21 (37 now) and the one thing that really always puzzles me about it is the weird way that pain/inflammation literally moves around my body jumping from place to place. Last Monday to Wednesday I had neck pain, Thursday I had shoulder pain, Friday I had upper back pain, Saturday I had leg pain (one knee and upper thigh) and today I have lower back and sacroilieac pain. My one blessing is that A.S. seems to target one or two areas of my body at a time. But what causes inflammation to move around a body like that? I keep hoping that it will one day just move right on out of my body. I can understand inflammation as a reaction in general but the movement truly puzzles me.

I'm sorry, since this is probably not the response you were hoping for but reading your post made me think and puzzle some more about this.

Ruby

la_monty #226019 04/17/06 04:41 AM
Joined: Apr 2002
Posts: 280
Third_Degree_AS_Kicker
Offline
Third_Degree_AS_Kicker
Joined: Apr 2002
Posts: 280
I agree, as others, that its more than simply, internal "colonies" of Kpa and solved by NSD. I know many who swear by the NSD and think I MUST be mistaken to say it didnt help me. They always say you didn't stick to the diet or you didn't stay on it long enough. I understand it worked for them and that is great but it dosent work for everyone. There must me more factors to AS. I was diagnosed in early eighties and from the time I first went to the doctor for the pain in my back and legs to the time my hips had to be replaced was only two years. I know people that fight AS for fourty years and have no fused joints. Go figure. The way I accept it is that AS is based on your immune system and everyones is different so AS pains are different as well as best treatment for AS in each person will be different. You can eat rice with no more AS pain than usual but let some one else eat it and he'll be thinking of staying in bed for the month. Same as how colds or flues come and go. I never get the flue and when I get a common cold its a day or two of sniffles and all is well. That same virus or bug gets my wife and kids in bed for a couple days and runny nose cough for weeks. Now I could tell my wife and kids they need to change and eat my diet but that really isnt going to help them. Our reaction is due to how our immune system handles things. Thats just my view. I'm sure many NSD folks will post the data that supports it but I've seen it and tried it. If it works for you go with it !! For me I'll eat what I like and I really dont see a strong relation to my AS. So I guess I would have to say enjoy the rice and dont think too much that others think its bad for you. If you like it and you dont feel a relation to your AS why worry about what others are saying. For years the world was flat and everyone knew it, until someone stepped out of the circle of knowledge and showed us it was round. I think the "burn out" is more of an acceptance of our immune system. SOmething happens that our immmune system stops fighting against ourselfs. I have heard of "burn out" from text books but never ment anyone that had fused joints from clinicle AS and then poof, burn out, no more symptoms. I hope it happens but I dont know and only can think its do to immune system acceptance. God bless and pass the rice


AND SO IT GOES...
la_monty #226020 04/17/06 05:42 AM
Joined: Nov 2001
Posts: 1,786
Diamond_AS_Kicker
Offline
Diamond_AS_Kicker
Joined: Nov 2001
Posts: 1,786
Just to add one more comment to this post. I was just typing my post about how one reason that I haven't been here in so long was because, after my crash,and resulting TBI, I haven't had nearly as bad of AS symptoms. While my physicatrist thinks that it is mainly because of the meds that I am taking because of the TBI, I am thinking that it could, also, be because of the total, day and night change in my mind set, and way I look at the world. I do agree with the folks on here, who talk about the variety of factors in AS. (I mean, I could prescribe severe brain injuries, because they cured me! lol) While I don't discount the NSD, because I'm sure that it works for some, I do think that it is a mind-body-spirit relationship (I will admit that I hesitated in putting spirit in that relationship, due to the risk of makeing someone angry, because I know that word has conotations, some that I do not imply.) because I have at least some belief that it was my mind-body-spirit's sabatoge of my ability to be with-out pain caused by the fact that, before I tried the NSD, I was a vegetarian for a decade. So, I have no doubt that is at least part of the reason why it didn't work well for me, because, I had to forve myself to eat meat again in ordrer to be on the NSD. Well, easily anyway. Oh, well, just thought I'd add a little more light on this post, or a little more confusion. Whichever you may chose to look at it .

Well, I wish you all good journeys, and a very pain-free day, and night.

I hope this finds you all well,

Take good care of yourselves, OK?

Daniel

DanInDC #226021 04/17/06 02:56 PM
Joined: Jul 2002
Posts: 1,198
Steel_AS_Kicker
OP Offline
Steel_AS_Kicker
Joined: Jul 2002
Posts: 1,198
Thanks for responses all with different aspects.
Don't get me wrong i am a believer in Kp and the NSD, just want to nail the details and the exceptions with cause and effect.
I know i have enzyme deficiencies and the more i read of stuff like
this site the more i realize some of my personal case characteristics. Forget where the site came from - a post?
Incidentally the starch list on this site lists Garlic as 13% and sun-dried tomatos as 20%. They include inulin as a starch maybe as the germ of garlic is full of it. Also interesting to see the levels of sucrose naturally occuring and lactose in goats milk is a surprise as i thought it lactose free. Wonder what type of goat.
Bottom line is that numbers are variable from source to source and sample to sample.
All i need now is a website that lists reactions to proteins.
But the truly interesting things about the condition central to this site is the high rate of incidence in Eskimos, circum-polar regions (Viking territory) and that Kp likes all the foods that these people lack the enzymes to digest and that it is genetic. Sounds like familiar territory.

So, bottom line for me is that i lack enzymes to digest wheat protein and milk protein, but i have the enzymes necessary for rice. As i have argued in other posts, its not about what one EATS, but all about what one DIGESTS - and of course how badly damaged is the gut.
The NSD/LSD is a wonderul tool to help heal the body and help discover the personal condition and circumstance - to learn one's own diet.
Happy learning.


Ted


One cannot believe all one reads on the Internet...
Abraham Lincoln
airman #226022 04/17/06 06:22 PM
Joined: Nov 2005
Posts: 95
P
Apprentice_AS_Kicker
Offline
Apprentice_AS_Kicker
P
Joined: Nov 2005
Posts: 95
I have been down many paths of elimination and tried to find out whether there is a cure as such. I have made progress, not had a flare for 3 months. I noticed a big change when I stopped frying meat, roasting/baking instead. Drinking kefir and yogurt daily. I stopped probiotics, I had tried Natren healthy trinity, primal defence, natures biotics, Udo's. Quite a few, but the thing that seemed to really benefit me was drinking 1 kefir and eating 1 yogurt using (Natrens starter) daily.

From my research and posts from others it seems you cannot kill bacterial strains, you just may kill off a strain and get a new one colonise soon after you stop taking what ever it is. The only thing that does go against this is for example candida/parasites and the odd person that claims to have killed a bacterial strain in their intestines. I say this because these are all opportunistic and people have certainly killed off candida for example in this forum. So I am not sure why we cannot kill off klebsiella or keep it at bay. I have recently done a full circle and now I am looking at immune suppression again. This is because even if you take a normal person for example and they eat beans, they get the gas and fermentation. Some get eggy gas, which is hydrogen sulfide. Many have awful habits and don't digest food properly. But things normalise for them but not for us.

I looked at my past and I suffered from hyperactive states, concentration difficulties and allergies since I was around 1yrs old. I have done quite a bit of research into cause of immune and gut disorders (an entire bookshelf) which lead me to autistic kids and they all have the same issues as I did as a child. There is a link there though, vaccines and mercury from mothers fillings leaching into them during pregnancy. Again in my past my issues started noticeably around 14 months with my first vaccines. When I was 11 my parents found through diets it could be controlled but flared when I had to have a vaccine. To the point at 12 yrs old they had arguments with the local school and doctors because they refused me to have a vaccine. Things seemed to settle down at 16 but then big problems started at 23. I went to the domimican republic, I had to take a heb B and a few other vaccines. I felt ok and thought now I was an adult I would be stronger. Loose stools started not soon after, I went to my old nutritionist and they found dysbiosis/candida etc. I went on antibacterials/fungals and was on a candida diet where I was told to eat as much as needed to hold up weight. So most of this was starch, and resistant starch at that. I quickly went down hill, lost 3 stone developed AS and had severe fatigue within 6 months. During the 6 months in my desperation I saw many nutritionists and doctors they all promoted and put me on the same diet with different anti XXX. I gave up with them and had a CDSA myself, realised what this issue was. I also had read about a hair mineral analysis so had one done to check for deficiencies. This is what has now come in use, because the link with autistic kids is toxic metals and chemicals causing immune disorders. Looking at my HMA I also have indications of toxic metal buildup. Andrew Cutler has defined ways to interpret and understand the output of a HMA and has defined a protocol to chelate metals which he personally followed with success. I have joined forums with Autistic people and people with heavy metal toxicity and they all have the same issues but when they reach common milestones the bacterial issues, allergies, liver congestion etc etc disappear. Toxic metals at this point have been drastically lowered. So I am now 1 month into chelation with DMSA to begin with and have a potential 6-12 months to go before I may see big changes but I have noticed initial reactions/changes so we shall see if my immune system finally kicks in and sorts things out. Sorry itís a bit long but some may find it of use. To finish off I think this also could align with nearly all approaches with diets etc because it all seems to be related to toxin loads and through optimal nutrition most people eventually make full recoveries. On the way though you have to deal with deficiencies because of the gut issues leading to low stomach acid, candida, diabetes, hypo/er thyroid, adrenal issues you name it.

Any thoughts/comments appreciated.
Phil

la_monty #226023 04/17/06 06:35 PM
Joined: Nov 2002
Posts: 1,039
W
Iron_AS_Kicker
Offline
Iron_AS_Kicker
W
Joined: Nov 2002
Posts: 1,039
I would like to meet the person who first came up with the phrase "it burns itself out" and ask them what possessed them to make such a comment.

A fire burns itself out when it runs out of fuel and oxygen....but the heat was intense in the meantime.

Could be the pain perceptions and the disease process is somewhat hormone driven and as we age....?

phil28 #226024 04/18/06 05:58 AM
Joined: Jan 2002
Posts: 90
A
Apprentice_AS_Kicker
Offline
Apprentice_AS_Kicker
A
Joined: Jan 2002
Posts: 90
Quote:

I have been down many paths of elimination and tried to find out whether there is a cure as such. I have made progress, not had a flare for 3 months.



Good for you. I'm in a major flare inspite of substantial LSD/NSD history.

Quote:

I looked at my past and I suffered from hyperactive states, concentration difficulties and allergies since I was around 1yrs old.



Same here. I had exposure to toxic metals and radiation and have a history of thyroid problems and high adrenaline.

Quote:

There is a link there though, vaccines and mercury ...



That's why I refused to vaccinate our boys when they were born and won't do it in foreseeable future. I think people should be very catious about vaccination if there's any history of immune disorders like ours.

Quote:

... So I am now 1 month into chelation with DMSA to begin with and have a potential 6-12 months to go before I may see big changes but I have noticed initial reactions/changes so we shall see if my immune system finally kicks in and sorts things out.




It is really interesting to see results. Keep us posted please.

la_monty #226025 04/18/06 09:07 AM
Joined: Sep 2001
Posts: 2,363
B
Colonel_AS_Kicker
Offline
Colonel_AS_Kicker
B
Joined: Sep 2001
Posts: 2,363
OK - we get older and partially disabled and so eat less, less starch, etc.


'Then you should say what you mean,' the March Hare went on. 'I do,' Alice hastily replied; 'at least - at least I mean what I say - that's the same thing , you know.' 'Not the same thing a bit!' said the Hatter.
Page 1 of 3 1 2 3

Moderated by  Dotyisle, Kiwi, Moderator 

Link Copied to Clipboard
Who's Online Now
0 members (), 41 guests, and 63 robots.
Key: Admin, Global Mod, Mod
Recent Posts
Uveitis
by Missalicia - 05/25/22 05:38 AM
Uveitis again and I miss you guys!
by Magician - 01/20/22 05:14 AM
Popular Topics(Views)
3,180,076 hmmm
1,239,459 OMG!!!!
644,424 PARTY TIME!
Powered by UBB.threads™ PHP Forum Software 7.7.5
(Release build 20201027)
Responsive Width:

PHP: 5.5.38 Page Time: 0.023s Queries: 35 (0.007s) Memory: 3.2823 MB (Peak: 3.5306 MB) Data Comp: Zlib Server Time: 2022-06-27 09:22:22 UTC
Valid HTML 5 and Valid CSS